Tuesday, April 21, 2009

The Survivor Hierarchy

The other week I read a post from a young adult cancer survivor on Facebook. He was recounting his experiences at a conference where he was interacting with other young survivors. The point of his post was that, compared to the experiences of others, his cancer journey was "relatively" easy and when he compared his story to those of his fellow conference attendees, he felt that he could hardly call himself a cancer survivor.

Here is a bit of what he wrote-

"As the moderator of the panel, I told my story first. I spoke of my three months of high fevers, losing thirty pounds and night sweats. I spoke of being admitted to the hospital in January, having surgery and being diagnosed with Stage IV Hodgkin Lymphoma. I spoke of going through intense chemo for six months and how lucky I was to come back cancer free in June. I spoke of how I couldn't wait to finish treatment so I could start going to concerts and baseball games. Then my fellow panel members told their stories. I heard a story of at 32 year old who was diagnosed at 6 months old and spent the last 31 years going to doctors to make sure their hormones were properly balanced. I heard a story of a 20-year-old girl fighting breast cancer whose family carries a rare disorder that affects their tumor-suppressing gene. I heard a story of being diagnosed with neuroblastoma at age 6 weeks and still dealing with he effects of her treatment as a 25 year old. I heard a story of being diagnosed with three different types of cancer over the 28 years of this person's life.

As these stories played out I learned what the true definition of SURVIVOR is and that I’m not a survivor by any means. For me to have a six-month span between diagnosis and a clean scan doesn’t make me a survivor. Who the hell am I to complain about not feeling well for SIX MONTHS compared to the hell the last 30+ years these true survivors have been living in?"

Sorry for the long cut & paste but I was really struck by this because I had been thinking about where someone like me fits into the advocacy world. As a caregiver (BTW- I really hate that term!!!), and as one who saw the side of cancer that no one wants to ever see, I can't NOT be forced into action against this horrid disease. But at the same time, I am very aware that I will be one step outside the survivorship ring. After all, I haven't had a personal diagnosis. Yeah, yeah- I was certainly there and survived my own experience, but I didn't have the drugs pumped through me. I didn't lose my hair (though mine did turn really gray!). I didn't get rashes or edema, vomit, experience neuropathy, or have a belly full of fluid with a drain. I didn't die. I didn't have cancer, but it was there every day in my life.

So to come across a cancer survivor questioning his own place in the food chain... I really got to thinking. The cancer world is just like the rest of the world. There are politics and hierachies. There are competing agendas and people just pushing their own agendas. There will be people who compare and judge others. There is discrimination (welcome to lung cancer!). There are cute marketing slogans. There are celebrity endorsments. People want to make money. People want to be recognized.

The truth is- none of it matters. The young man who questioned his right to call himself a survivor is no different than me. No matter where we are in life, at some point everyone wonders whether they are worthy. In the cancer world, who cares if you are! Dan was the biggest survivor I know. Just because he is no longer here doesn't mean you remove that title from his list of accomplishments. I can't fret over whether someone would want to hear my opinion (you all know I am not afraid to bring it!). Change and progress isn't achieved by sitting on the sidelines waiting for someone to put you in the game. You just have to figure out how to get in that game.

So instead of wondering where I fit in on the cancer ladder, I am changing my attitude. I am just overwhelmingly HUMBLED by the obstacles others have overcome. I am MOTIVATED by their example. Some of those people are cancer patients with the physical disease. Some of those people are the friends and families who face their own emotional and mental battles. I've seen those people. I sat with them in waiting rooms at Hopkins. They have become my friends. I am one of those people.


Obsessedwithlife said...

You said it well. Thank you.

Anonymous said...

I met Dan about 2 years ago through a mutual friend and was immediately struck by what an amazing person he was. We lost touch after awhile, but I stumbled on this blog in mid-December and have been reading it ever since. When I read that Dan had passed it made me realize just how much of an amazing person he really was and that he really did live his life to the very fullest. Just two days after hearing of his death, I learned that a close coworker had been diagnosed with Breast Cancer at only 28 years old. Yesterday she had a double masectomy and a hysterotomy, she still has a long battle ahead of her, but knowing how much Dan fought gives me hope that she will get through anything that life throws her way.

Meg-I don't know you at all, but from what I have read you are an amazing person and Dan was very lucky to have you in his life. Keep up the writing, it's such a comfort knowing that there are people that CAN and DO make a difference in the world.

Anonymous said...

well said!

Anonymous said...

I agree with the others Meghan, very well put.


Anonymous said...

nice post Meg-

Anonymous said...

I keep on being astounded by your sharp, spot-on insights and the way you're able to put them to words.
Keep it up!
Still wishing you all the strength you need,
Reine (Belgium)

Anonymous said...


I'm sitting here at work after reading your last post for the second time around and thinking about how you should speak at our next agency meeting. I work in the Life and Financial Services industry and these people need to hear this real life stuff because this is why they are in business.

On another note, even though the responses have decreased, I want you to know that everyone is still reading. In fact, I confess - I'm officially addicted. I've been a 'closet' reader of your blog since the Summer and can not wait until the next one posts. It's worse than any other addiction I have but the most fulfilling ;) (Just don't tell Chris!)

See you soon - you're the best!


Debra, RN, OCN said...

This is a great post. I don't know you personally, but have been involved with NCCS since 1987 and am a 29 year survivor of 3 primary cancers now fighting stage IV metastatic breast cancer. I am hooked up to oxygen 24 hours a day, 7 days a week and that is what I hate most. If I have to go somewhere, I have to hook up to a portable tank. I have a portable oxygen concentrator but it is heavy and shlepping it around hurts my back. But all of this is a simple annoyance when compared to the fact that I have been close to death a number of times and am still here to tell the tale. I just watched my daughter perform in an opera in Russian. I could not have traveled across the country to see this were it not for my son's ability to take care of me. I am a survivor, my children are survivors, and you are a survivor. Dan continues to be a survivor. Look at the NCCS definition of survivorship and you will see how inclusive it is. Cancer affects one out of every two people in the US today. It is a huge community that needs to recognize itself and understand its membership.

Matthew Zachary said...

Late to the game on this one but well said, Meg. Keep inspiring us in Dan's honor and memory.

Matthew Zachary